May 10, 2012
By Cori Ast
|Susan Krigel, Ph.D., and Rhonda Johnson, Ph.D.|
This year, more than 13,000 Kansans will receive a cancer diagnosis. They will join more than 200,000 Kansas adults who are already living with the disease, including Micki Scherling of Goodland — a three-time breast cancer survivor.
"I lost my identity"
When she received her first diagnosis at age 38, Scherling and her husband Dane were grateful doctors had found the cancer early. Her course of treatment included a mastectomy and reconstruction at Baylor University Medical Center. She and her family made 12 trips to Dallas that year, but the margins were clear — no chemotherapy necessary. Six years later, in the fall of 2006, Scherling's second diagnosis wasn't as fortunate.
"I began to experience a lot of pain in my sternum and ribs. I just felt like I got hit by a train," she says. "I was in pain all the time." Doctors diagnosed her with stage 4, grade 4 metastatic breast cancer. This cancer was much more aggressive and so was the treatment plan. Scherling began chemotherapy immediately with a Wichita-based oncologist who maintained a clinic in Salina, three hours from their home.
"Physically, it wasn't bad. The hair loss was the most significant emotional trauma. I felt like I lost my identity. I had no idea that hair, eyelashes, eyebrows helped define your personality," she says. "It was probably one of the lowest times in my life."
Scherling believes the second diagnosis plunged her into a four-year bout with depression, although she never saw a psychologist or psychiatrist.
Scherling's emotional struggle with cancer is common — and even more common among young people.
"Cancer is typically a disease of aging, so it's much more disruptive to a younger person's life trajectory," explains Susan Krigel, Ph.D., a post-doctoral fellow in psychology at the University of Kansas Medical Center.
Krigel specializes in something known as psycho-oncology — a recent subset of psychology that focuses on improving the mental health of individuals diagnosed with cancer and their caregivers.
Rhonda Johnson, Ph.D., a psychologist at The University of Kansas Cancer Center, says the field of psycho-oncology is the natural outgrowth of two phenomena: 1) the idea that treating a patient's emotional state while treating their physical state would result in better outcomes, and 2) the technological advances that made improved detection and successful treatment of cancer.
This means that people today live longer with cancer — and with the reminders of their cancer.
"These reminders include physical side-effects of treatment such as cataracts or osteoporosis, or they might be things like paying medical debts or fear to leave a job because they worry they won't be able to get health insurance again," says Johnson.
Several studies have also documented physical effects from the psychological stress associated with a cancer diagnosis. One such study, recently published in the New England Journal of Medicine, found that patients with cancer were at a greater risk of suicide, heart attack and stroke than individuals who never had a cancer diagnosis.
"Physically, a patient feels the effects of cancer, but ironically, the outside world can't see that they've changed," says Johnson. "So not only is there this huge change, but the patient's support system often tries to push the patient back to who they were before the diagnosis. That's a pretty tall order — particularly with the presence of constant reminders of their cancer."
That's why Johnson, Krigel and other psycho-oncology providers work with patients to get them to accept a "new normal."
"People think their goal is to get back to the way things were before. It's not possible. They've changed, the people around them change," says Krigel, who works in the Breast Cancer Survivorship Center at The University of Kansas Cancer Center. "Each stage of going through cancer requires recalibration — one needs different coping mechanisms to make fast decisions and then to endure through the marathon of treatment."
Providers like Johnson and Krigel also work with their patients to confront the possibility of death.
"It's an 'and-both' situation," says Johnson. "We are all going to die, so preparing for it just-in-case allows us to live more fully in the present. If we don't prepare for the inevitable, we keep going back to the 'What ifs?' This doesn't mean the patient is giving up — but it means we are going to prepare the patient for the 'What ifs?' so they can put away the uncertainty and live."
Some patients who complete their treatment experience a different kind of uncertainty, says Krigel. "They feel abandoned by the health care team, start getting terrified about recurrence," she explains, adding that most cancer survivors don't seek psychological assistance until after treatment.
Surviving Cancer in Kansas
Today, cancer patients across Kansas can benefit from Krigel's expertise through free one-on-one counseling or group survivorship classes near their hometown thanks to the generosity of donor Kathleen Willcoxon and the strength of the Midwest Cancer Alliance (MCA). The MCA is a region-wide network of 16 hospitals and cancer care organizations working to advance the quality and reach of cancer prevention, early detection, treatment and survivorship in Kansas and western Missouri.
"It has been a joy to watch the plan come to fruition," says Willcoxon of her donation to the Midwest Cancer Alliance for psycho-oncology services. Willcoxon and her husband both grew up in rural western Kansas and value the services provided to rural Kansas communities through the MCA. "To support a program that offers help and hope to people we care deeply about is a privilege."
"The value of the MCA is that we can accomplish things together that our members would not be able to accomplish alone. Our psycho-social programs are one example of that," says Hope Krebill, executive director of the MCA. "Most cancer centers don't see enough patients to be able to have one individual who specializes in behavioral health for those living with cancer, but across the network there is enough need to support a position like Susan's."
Krigel uses telemedicine — a secure videoconferencing technology — to deliver counseling from her office in Kansas City. Currently, the MCA is piloting free one-on-one counseling for patients receiving cancer treatment at the Via Christi Cancer Center in Pittsburg, with plans to expand the individual counseling sessions to other member sites. The sessions are provided at no cost to the patients because of funding from the anonymous donor.
In addition to one-on-one sessions with Krigel, the MCA offers several other group programs to improve the mental and emotional health of Kansans with cancer. These programs include Cancer Transitions, a six-week group survivorship class sponsored by LIVESTRONG that emphasizes exercise and nutrition, and hour-long educational group classes from Turning Point, a not-for-profit based in Leawood. These programs are currently provided via telemedicine to six MCA member locations: Stormont-Vail HealthCare in Topeka, Hays Medical Center, Hutchinson Regional Medical Center, Salina Regional Health Center, Via Christi Hospital in Pittsburg, and Goodland Regional Medical Center.
Goodland Regional Medical Center was the first MCA member to recognize a need for behavioral health and patient education classes — and to ask the MCA for help in meeting it.
Krebill and her staff are hoping to continue to expand the group and one-on-one psychosocial services to meet increasing demand across all 16 member sites.
"We are a package deal"
In 2009, Scherling was still fighting the metastatic breast cancer when her first cancer recurred. In 2010, she sought outside help through Caring for the Heart Ministries to deal with the emotional drain of fighting two cancers at once.
"I needed someone who was on the outside to help sort through all this," says Scherling, who had seen how her cancer was affecting the wellbeing of her husband and two sons.
"Cancer happens to the family. Guilt is a huge thing — it's very rare that I talk to a cancer patient who doesn't feel some guilt," says Krigel.
Krigel says caregivers often experience a variety of emotions including anger, resentment and guilt —very similar to cancer patients themselves — that can benefit from experiences with a counselor or a support group.
Today, Scherling says she lives "abundantly" with two cancers, thanks to a strong support network from her family, friends and counseling sessions.
"We are a package deal — it is body, spirit and soul. You've gotta treat all three of those to walk through cancer successfully," says Scherling. "At the beginning, we were only treating the body, and that's why I was failing. Now I've found the right mix. You have to be disciplined to treat all three of those parts of your body, but I feel fantastic."